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Month: March 2008

A day for questions

A day for questions

I woke up late this morning and I am just now settling down to my coffee.  Yesterday was one of the worst days I’ve had in a long time.  My muscles went crazy in what I can only describe as a symphony of spasms.  The pain was just this side of unbearable; I have never known fear as I did yesterday.  I went from laying in the bed to laying on the loveseat writhing in pain and passing out.

I got my blood draw last week and I am sure the results are in by now.  I am scared to call my rheumy’s office.  What if all of my numbers look OK?  That would be a good thing, right?  But then, why are my muscles doing this, and where do I turn to find out what’s going on?  Then I think, what if my numbers are really bad, what the hell is happening to me?

In the 2 years since I got sick, I have had so many misdiagnoses, wrong turns, neglectful docs, (not the ones I have now) that I am fearful for what is happening now.  Will anyone listen to me?  Are they going to say it is for the other doctor to try and figure out?  I am scared to make that call, scared to be let down with none of them wanting to deal with these new symptoms.  I feel very helpless.  I don’t like my fate being in the hands of someone else’s judgment call.  I NEED to be able to get the point across that I CAN NOT live like this for one more day.  I need someone to hear me and care enough to try and find out what is causing my muscles to attack me.  I’m OK when it comes to the known during flares, but this new stuff is so far out into the unknown territory for me it is scaring me to death.

Wish me luck…any and all prayers greatly appreciated.

Until next time

Flaring, Friendship, and Flatulence

Flaring, Friendship, and Flatulence

It’s a triple threat! Oh lordy I am in the worst flare. It’s almost midnight and I’m sitting here in my ratty bathrobe and I have been reading all the blogs that I follow…I have been neglecting this blog, but not on purpose!!! As my kids used to say, everything that happened was ‘not on purpose, it was on accident’, ah, that brings back memories. My kids are technically grown, I’ll just leave it at that 🙂 I think I’ll ask my son’s wife if he says it was on accident, he he.

OK, I feel the need to whine and kvech so here I go…This flare sucks! This disease sucks! I want my life back. I didn’t sign up for this. Why me? I have no control over my body, my body controls me. I hate crying. I hate feeling like a burden on my husband. I hate that my granddaughter saw me cry today (she’s 2 and she thought it was funny so at least I don’t have to worry about scarring her for life…) I hate being held hostage to the doctors ideas, or lately non-ideas~that’s ultimately worse. I hate having lost my job and along with that my insurance when I got sick. I hate paying almost 800 dollars a month in meds cost. I hate feeling guilty about being the one in the family that is bringing us down financially. I hate that I don’t have a car anymore and can’t drive. I hate that when I’m sick I mole-hole myself up in the house. I hate when I can’t make it up our stairs out of our room in the morning, and I hate that I’m weak enough to cry about that too. I hate my legs for burning and muscle clenches that would bring a horse down, I hate my burning and freezing cold hands and feet. I hate that when this happens I fall into a coma like sleep whether I want to or not. It all boils down to-no control. Who would ever have thought that they would wake up one day, not only feeling really shitty, but then come to realize, they have absolutely no control. ok, im winding down now. whew.

Friendship: My husband is my voice of reason, sometimes so much reason that I want to throw a shoe or a remote at him, whichever is closer. But it’s true. He’s always got my back. He goes to every visit that he possibly can ( I tend to clam up around docs like i was sitting in the principles office or something, they intimidate me-more therapy for me, yipee) and when I forget what I was going to say he says it for me, he tells the embarrassing stuff too. He is my rockstar. If they don’t want to go in the direction we think things should, he talks them into it. I think docs have a lot of patients that just listen to what they say and go home. I know I used to. Until I got sick with the disease called AUTOIMMUNITY. It can do whatever the heck it pleases, and I am the body that feels it all. So if the docs don’t want to hear me, the Big C tells them again. They have to listen to me, it’s my body. My quality of life. They aren’t at home with us watching my writhe in pain, trying to put the fire out on my legs, or trying to walk when my joints don’t want to, or trying to remember whatever the heck it is I was trying to remember. We learned real quick that we had to be our own champions and read read read!! As much legit information that we could get out hands on to stay on top of things. My favorite friend is my husband Big C. I love that man and he has stood right beside me through this whole awful ordeal with his arm around me and telling me that one day, it will be better. That’s just one of the many reasons I love him

Which brings to flatulence..ahh, funny word, idn’t it? Men. yep, Men. They love to rip em, smell em, they think they’re funny, and if they can get it to go up or down an octave you would’ve thought that the Steeler’s just got a touchdown starting at the 20. sigh. Sooo, Grampa can blow the bassoon. Gramma can too after chili night and blame it on Grampa. But my sweet baby granddaughter, who is ultra girly and polite with peeze and dankoo, let the biggest one rip today, it sounded like an elephant blowing. She looked at me, waited a beat and just busted out laughing right into Grampa’s arms.

That’s our girl. Through all the pain, she made my day.

Pass the buck please, not… (a rant)

Pass the buck please, not… (a rant)

It’s been a couple of days since I’ve written. My body has been under attack by my body… I really hate this, it’s so frustrating!! I saw my neurologist a few weeks ago for my burning that I have. It’s mostly in my legs, but it travels. I’ve been taking Neurontin for it for a while with no relief. So, the neuro prescribes Lyrica (which is helping) and draws blood, sets up an MRI, and orders a punch biopsy to look for small fiber neuropathy. Well, I posted already about my MRI results, clean, yeah! I’m still waiting for the call for the biopsy, it’s a referral to a specialist in one of the best hospitals in the Pacific Northwest. I was told, ‘it’s takes some time to get it’. Okay, if there is anyone who can tough it out and wait, it’s me. I’ve gotten used to the waiting game when it comes to anything that requires a referral. sigh. SO, a few weeks ago I called to get my blood results back and was told by the nurse that “everything looks fine”. I should have asked for a copy of everything.

Fast forward to last week. My legs decide to give out on me. When I go to stand up they shake all over and I am week as a cat. I’ve never experienced this symptom before and it scares the shit out of me. I had a routine check up with my rheumy that week so I discuss the weakness and the pain and he tells me that it sounds like a neurological problem and that I need to see my neurologist about it.

The next few days are pure hell as the weakness changes into full muscle tightness, not like a cramp, but my entire legs muscles harden up like a rock and it is so painful and awful. I can hardly walk and they tighten up like a rock and deflate and tighten again. It coincides with a weird headache behind my eyes and I’m having a hard time swallowing. I finally get in to see the neuro and he looks at the labs from my previous visit and tells me that my sed rate is sky high. He also tells me that he will push for the referral to move faster so I can get the biopsy for the burning, but the new locking up of my muscles is an autoimmune issue and I need to see my rheumy. I’m pissed. When I saw the rheumy the previous week, I had asked for him to draw a panel, and he said no, not yet in 10 weeks. He didn’t think the symptoms I had were rheumatological, so, no bloodwork. In the meantime, my sed rate is severely elevated and he doesn’t know it, I don’t know it, and apparently neither does my neuro until I sit in his office on Friday and he says, “huh, look at that”. I could strangle his nurse for telling me everything is OK.

Why don’t doctors listen to you when you tell them you know something is wrong? I know my body better than anyone else. And I’m not a ‘panicker’. I’ve been trough hell and back this past couple of years and I think I’ve been a trooper. If there were proper communication between my docs I would be on something more than just the plaquenil and prednisone to combat whatever is happening to my muscles.

Now, I have to wait until Monday, have the neuro’s office fax my sed rate results to the rheumy’s office-THEN they will see me and draw my blood and take the next step.

Rant over. Aren’t you glad? LOL

I found a really good video on mysotis which is an autoimmune disease that effects the muscles. Here is the link 🙂

until next time


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